Marin panelists say no to breast cancer genetic testing

Should Jewish women get tested for the breast cancer gene? Panelists last week at Congregation Rodef Sholom's Sisterhood event voiced a unanimous "no."

Dr. Robert Rodvien was particularly critical of the test because it often yields false results.

"The good test costs $2,400, and if you pay less, you'll get what you pay for," said the Marin oncologist and breast cancer specialist. Moreover, "if you have the test done and it comes up with a positive, it becomes a tripwire — you'll never get medical insurance again."

The program, titled "Everything You Ever Wanted to Know About Breast Cancer But Were Afraid to Ask," included information about the basic types of breast cancer, treatment and living with cancer. Most of the panelists were members of the synagogue.

In addition to Rodvien, participants were Dr. David Galland, an obstetrician-gynecologist; Sheila Propheter, a therapist specializing in counseling people with cancer; Michelle Szychter, a nurse; Nancy Fox, a public relations expert; and Chris Ruppe, owner of A Lady's Touch shops, which sell mastectomy products. All of the women were breast cancer survivors themselves.

Rodvien opened the panel with a short lesson on the anatomy of breast tissue and a discussion of the so-called "Ashkenazi gene." Approximately 15 to 20 percent of Ashkenazi Jewish women have breast genes that deviate from what is considered normal. But most are not seriously at risk for breast cancer. Medical research, he said, has not yet determined which of the variations are significant predictors of the disease.

Panelists also touched on the mystery of Marin County's high incidence of breast cancer, one of the highest in the United States. While many theories exist about its cause, the doctors reminded the audience that no one knows the answer. The best strategy, they said, is early detection.

The physicians strongly advocated regular breast exams through three means: by women themselves, at annual intervals by a physician and through mammograms. Galland stressed that none of these exams is effective by itself.

"Cancers are caught most frequently by women themselves," he said. "But mammograms catch them earlier."

However, he pointed out, mammograms can fail to pick up some forms of breast cancer — even in tissue that is known to be cancerous.

Szychter's bout with breast cancer was her impetus to get involved with the sisterhood. "Before, I didn't even belong to the synagogue," she said. Breast cancer "made me want to do something about women's issues, and it brought me back to my faith."

Szychter, a co-organizer of the panel, has given her name to Rodef Sholom's rabbis as a resource for other women who are newly diagnosed with the disease.

Rodef Sholom's Sisterhood initiated the panel as part of its commitment to the National Council of Women of Reform Judaism. Two years ago at its international conference, the council passed a resolution to make breast cancer a priority.

"The international organization is very conscious of social issues," says JoAnne Abrams, one of the organizers of the panel. "It's part of our need to inform the community and to be there for support."

The breast cancer survivors on the panel spoke about importance of support, and Propheter and Ruppe performed a short skit demonstrating what not to do, including giving unsolicited advice or focusing on your own feelings and fears.

Their message was to be sensitive to the person who is ill, letting her guide the discussion about her illness, and expressing how she wants to receive sympathy and help.

Fox read excerpts from her visualization journal, including one visualization in which she imagined Little Red Riding Hood as a protector.

She has now become active on a daily basis supporting other women with breast cancer. "Judaism," she said later, "gave me a moral and ethical way of living, [stressing] right-mindedness and the importance of helping others."

Audience members went home with Propheter's list of nine ways to help someone with breast cancer, which ranged from "just listen," to giving a fun gift because "they don't laugh much at their house these days."

Abrams also passed out plastic shower cards, designed for the bathroom, that offer instructions on how to perform a breast exam. The cards were created by the Sisterhood of Temple Emmanuel of Great Neck, N.Y., a suburban Long Island community that also has an unusually high rate of breast cancer.